Determined little boy from Lancashire with rare genetic disorder needs help getting to Mexico for treatment
The family of an eight-year-old boy with a rare genetic disorder are desperately fundraising to get him treatment which is only readily available in Mexico.
Leanne Barker, from Rishton, whose son Olly is the youngest of four boys has a rare genetic disorder called SYNGAP 1 .
This means he has a learning disability, epilepsy, autism, delayed myelination, cilia dystrophy, low tone, hyper mobility and dystonia.
He is also non verbal and struggles with depth perception issues with his vision.
Leanne, who is self employed and has a hair salon in Great Harwood called Studio 23, said: “He was diagnosed three years ago in March and has splints to help him walk and a helmet to protect him from banging his head or when having seizures.
“He uses a specialist pram/wheelchair provided by the nhs to help him when he is fatigued from either seizures or walking short distances.
“It’s also his safe space when he gets overwhelmed and over stimulates his brain doesnt know when his body is tired.”
Leanne describes her son who is in Year Four at White Ash special school in Oswaldtwistle as the most “cheeky and determined little boy”.
She added: “He absolutely loves learning. Even though he struggles so much he never gives up trying. His specialist interests are numbers letters shapes and planets.
“He loves his dog Beau who I think she is actually his bestest friend in the whole world.”
Olly has been approved for the neurocytroton treatment in monterray Mexico at neurocytonix.
It’s a 28 day protocol but has to have mri and eeg and blood work two days before treatment and then again two days after so the family will be there for 32 days.
Leanne and her partner Neil who is also self employed as a joiner, so both of them are able to attend hospital appointments are hoping to get the whole community involved to help out.
They have already secured some fundraising events through their local boxing gym in Great Harwood.
Leanne said: “My oldest is at Accrington Stanley so they also said they will brainstorm what they can do to help and Great Harwood Rovers are trying to support where they can as my other boys are part of their club.
“We’re trying to raise £40,000 so Olly can travel to Mexico for a 28-day clinical trial, which could be life-changing.
“This treatment has the potential to improve his independence and help him achieve things that most children can take for granted — from simple communication to greater mobility and better health.
“Olly dreams of being more like his older brothers, and this opportunity could bring him one step closer to that goal.
“We need to raise £40,000 by may as the treatment needs to be paid 8 weeks before we go.”
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